I need a "talk to me like I'm five" plan...
November 16, 2011 11:08 AM
Reached a point of desperation-- I'm looking for recommendations for an IBS-C elimination diet that defines, in great detail, what can and can not be consumed and what should be reintroduced and when. Also interested in anyone's experience with the process for this same issue.
I've been dealing with the nebulous IBS-C (constipation) for the last five years, though it was IBS-D (diarrhea) for about a decade before that. Frankly, I far preferred the IBS-D-- I was only miserable five or six times a day, rather than all the time, as I am now. There's no need for details here but my desperation is because I'm in near-constant pain from my pelvis to up past my ribcage (my rare good days are just "uncomfortable"). This impacts my ability to function, my relationship, and increasingly, my ability to breathe and sleep. I've tried pretty much every recommendation for dealing with IBS-C that I've found online and nothing works consistently, and so I'm not sure what else to do.
I'm thinking it can't hurt to try an elimination diet to see if I can identify an intolerance. I'm not even sure that this will help, because even a glass of cold water has set off a major episode, but I'm at a loss and I dread the thought of living like this forever. Yes, I have been properly diagnosed by a couple of medical doctors, but there are only three doctors in the town where I live now and I'm not super-fond of any of them, nor do I think they would be of much help in the practical application of such a diet. I really dislike the atmosphere of medical forums, so I'm coming to you.
The elimination diets I've found online that are specific to IBS-C are too broad and general for me. I struggle with meal planning in general, so I need to know exactly what I can and can't eat, for how long, and in what order I should reintroduce the potential trigger foods. I'm willing to buy the right book but most of the ones I've come across online seem a bit too self-help-y for me-- I'd like one backed up with some science, not "enlightenment". Recipes would be a bonus. Recipes that can be made for my purposes and to which I can add ingredients for my steadfast carnivore husband would be a double-bonus. Thanks!
I've been dealing with the nebulous IBS-C (constipation) for the last five years, though it was IBS-D (diarrhea) for about a decade before that. Frankly, I far preferred the IBS-D-- I was only miserable five or six times a day, rather than all the time, as I am now. There's no need for details here but my desperation is because I'm in near-constant pain from my pelvis to up past my ribcage (my rare good days are just "uncomfortable"). This impacts my ability to function, my relationship, and increasingly, my ability to breathe and sleep. I've tried pretty much every recommendation for dealing with IBS-C that I've found online and nothing works consistently, and so I'm not sure what else to do.
I'm thinking it can't hurt to try an elimination diet to see if I can identify an intolerance. I'm not even sure that this will help, because even a glass of cold water has set off a major episode, but I'm at a loss and I dread the thought of living like this forever. Yes, I have been properly diagnosed by a couple of medical doctors, but there are only three doctors in the town where I live now and I'm not super-fond of any of them, nor do I think they would be of much help in the practical application of such a diet. I really dislike the atmosphere of medical forums, so I'm coming to you.
The elimination diets I've found online that are specific to IBS-C are too broad and general for me. I struggle with meal planning in general, so I need to know exactly what I can and can't eat, for how long, and in what order I should reintroduce the potential trigger foods. I'm willing to buy the right book but most of the ones I've come across online seem a bit too self-help-y for me-- I'd like one backed up with some science, not "enlightenment". Recipes would be a bonus. Recipes that can be made for my purposes and to which I can add ingredients for my steadfast carnivore husband would be a double-bonus. Thanks!
Also, if the pain is that bad you should consider seeing a gastroenterologist. Because I have IBS-C some of the time (I change around, there is less focus on the subtype thing these days because most people do) and I never feel *anything* like that. It's hard to know what is going on really, given that IBS often involves a dysregulated pain response so things can hurt when they shouldn't or more than they should, but serious constipation can lead to nasty complications. Plus it sounds really not-fun. You should get real treatment rather than just trying stuff you read on the internet. In my experience GPs don't always know that much about IBS, you should definitely consider escalating to a specialist.
(I have an MSc in digestive physiology and a PhD studying dietary interventions in IBD and have had IBS for twenty years, so I have a good understanding of the science involved and really know bad many GPs are at this stuff)
posted by shelleycat at 11:39 AM on November 16, 2011
(I have an MSc in digestive physiology and a PhD studying dietary interventions in IBD and have had IBS for twenty years, so I have a good understanding of the science involved and really know bad many GPs are at this stuff)
posted by shelleycat at 11:39 AM on November 16, 2011
Ok, so my symptoms are way, way less than yours, so much so that I get kind of apathetic about the idea of changing my eating habits for them. But the one thing I've actually bothered to do in the past 5 years was a FODMAPs elimination diet. I got a lot of good information out of it about the cumulative effect of various harder-to-digest foods that I was eating over the course of the day, that helped me make sense of when and why I was getting symptoms (and when I wasn't). Here's the elimination and challenge plan I used, based on the book IBS - Free At Last!, which I had seen recommended previously on Metafilter. The book didn't really get me started so much as this article, which you can read for free if you sign up on Medscape. But I'm the sort of person who needs to read five detailed research articles before I take any pop health blog seriously, so ymmv.
But assuming you're just looking for something easy to follow: to do the elimination and challenge phases of a FODMAPs elimination diet properly, your best bet is probably to read the book and then go to the author's website, because there are some additions and changes she's made as she's found out more about the oligosaccharide content of different foods. She has some suggested meal plans (I think about 2 weeks' worth) in the book, but I mostly improvised. Also, while the whole thing did great for food-related symptoms, the two days when I had Important Job Interviews, I still had all kinds of anxiety-exacerbated problems, and I'm sure ice water would've still set me off, too. So be cognizant of the fact that hey, IBS = really damn sensitive GI system, and changing your food inputs may only help so much depending on what's driving your symptoms.
posted by deludingmyself at 11:39 AM on November 16, 2011
But assuming you're just looking for something easy to follow: to do the elimination and challenge phases of a FODMAPs elimination diet properly, your best bet is probably to read the book and then go to the author's website, because there are some additions and changes she's made as she's found out more about the oligosaccharide content of different foods. She has some suggested meal plans (I think about 2 weeks' worth) in the book, but I mostly improvised. Also, while the whole thing did great for food-related symptoms, the two days when I had Important Job Interviews, I still had all kinds of anxiety-exacerbated problems, and I'm sure ice water would've still set me off, too. So be cognizant of the fact that hey, IBS = really damn sensitive GI system, and changing your food inputs may only help so much depending on what's driving your symptoms.
posted by deludingmyself at 11:39 AM on November 16, 2011
And also what shelleycat says, because yes - this sounds really not-fun and worth taking to a specialist, in addition to whatever you try on your own.
posted by deludingmyself at 11:41 AM on November 16, 2011
posted by deludingmyself at 11:41 AM on November 16, 2011
I went through an elimination process to find dietary triggers for my Crohn's disease. It was under the supervision of a dietitian, and was pretty successful. As I was already under the care of a gastroenterologist, and this was under the care of his team (initiated by the nurse specialist), I didn't need to ask for the referral or anything.
The process they used was a Lofflex diet, as described at the link, and involving two weeks of pure liquid feed, then the reintroduction of some fairly basic, normally harmless foods (white rice, chicken, and a few other things). After stabilising on that, additional foods were added at the rate of one or two a week, checking to see if any symptoms returned before introducing the next food.
It was great being symptom free, until the time came to introduce wheat, and much to my horror, that was the main cause of my Crohn's activity. But at least I can be sure that's the cause, because the process was thorough and laborious enough (it took about a year to get all foods back in (or excluded from) my diet). So do go to a specialist, because if you don't test thoroughly enough, you won't be absolutely certain of the exclusion, and you might not stick to the diet.
posted by ambrosen at 11:45 AM on November 16, 2011
The process they used was a Lofflex diet, as described at the link, and involving two weeks of pure liquid feed, then the reintroduction of some fairly basic, normally harmless foods (white rice, chicken, and a few other things). After stabilising on that, additional foods were added at the rate of one or two a week, checking to see if any symptoms returned before introducing the next food.
It was great being symptom free, until the time came to introduce wheat, and much to my horror, that was the main cause of my Crohn's activity. But at least I can be sure that's the cause, because the process was thorough and laborious enough (it took about a year to get all foods back in (or excluded from) my diet). So do go to a specialist, because if you don't test thoroughly enough, you won't be absolutely certain of the exclusion, and you might not stick to the diet.
posted by ambrosen at 11:45 AM on November 16, 2011
i had symptoms like yours.mine caused me to vomit every couple of weeks, it woke me up, kept me from sleeping, made eating awful. sometimes i could barely get relief soaking in a hot tub. pain killers made it worse. laxatives, fiber powders, miralax - all of them would work for maybe a week before they'd stop working again.i tried to stop eating cheese, stop eating dairy, reduce my sugar and white flour intake, reduce my soy intake - nothing. no results.
the only thing in the world that helped me is Amitiza. it took a week to really get working and i felt dizzy and nauseated the first month i took it. i would still recommend it every time to someone with IBS-C. my life is immeasurably better. feel free to memail me if you want to talk about this further.
posted by nadawi at 11:48 AM on November 16, 2011
the only thing in the world that helped me is Amitiza. it took a week to really get working and i felt dizzy and nauseated the first month i took it. i would still recommend it every time to someone with IBS-C. my life is immeasurably better. feel free to memail me if you want to talk about this further.
posted by nadawi at 11:48 AM on November 16, 2011
My wife was diagnosed with Celiac's Disease (no gluten) a few years back. Her doctor said at the time that a lot of irritable bowel eventually ends up being traced back to gluten, and the numbers of people properly diagnosed are rising more and more every year.
I'm not a doctor and I barely know what I'm talking about, but maybe that'll help somehow.
posted by jragon at 11:51 AM on November 16, 2011
I'm not a doctor and I barely know what I'm talking about, but maybe that'll help somehow.
posted by jragon at 11:51 AM on November 16, 2011
I hope this isn't a derail, because you asked for an elimination diet, but you also said you were desparate! For patients with IBS-C, where the constipation is severe, the Mayo Clinic suggests Lubiprostone (Amitiza) might help on preview, nadawi also suggested this):
"Lubiprostone is approved for adult women and men who have IBS with constipation. Lubiprostone is a chloride channel activator that you take twice a day. It works by increasing fluid secretion in your small intestine to help with the passage of stool. Common side effects include nausea, diarrhea and abdominal pain. More research is needed to fully understand the effectiveness and safety of lubiprostone. Currently, the drug is generally prescribed only for those with IBS and severe constipation for whom other treatments have failed."
I thought that if you only have 3 doctors in your area, your doctor may not have suggested this course of treatment to you.
As far as the Elimination Diet: triggers, as shelleycat says, vary widely for individuals! Actual food allergies are rare, but sensitivity to glutens (and other sugars) and lactose intolerances are pretty common. So first you get your physician to test for any food allergies, if you haven't already.
With an elimination diet, you try to take out any possible culprits for a period of two weeks. You can keep a journal to track your symptoms and stress levels while off that food. And since you are really suffering, you might even want to start with eliminating a range of food out of your diet for two weeks.
Sounds like some good specific diets have been recommended up above.
I want to remind you that you need to keep up your liquids (clear liquids are generally the "safest") during all of this, and of course you have to keep up fiber intake for your particular problem. You can try Citrucel or Metamucil, if you haven't already, and also add magnesium supplements.
Lastly, stress factors in as well as diet, so lifestyle changes shouldn't be dismissed here. Relaxation exercises, yoga or meditation might help, too.
posted by misha at 11:57 AM on November 16, 2011
"Lubiprostone is approved for adult women and men who have IBS with constipation. Lubiprostone is a chloride channel activator that you take twice a day. It works by increasing fluid secretion in your small intestine to help with the passage of stool. Common side effects include nausea, diarrhea and abdominal pain. More research is needed to fully understand the effectiveness and safety of lubiprostone. Currently, the drug is generally prescribed only for those with IBS and severe constipation for whom other treatments have failed."
I thought that if you only have 3 doctors in your area, your doctor may not have suggested this course of treatment to you.
As far as the Elimination Diet: triggers, as shelleycat says, vary widely for individuals! Actual food allergies are rare, but sensitivity to glutens (and other sugars) and lactose intolerances are pretty common. So first you get your physician to test for any food allergies, if you haven't already.
With an elimination diet, you try to take out any possible culprits for a period of two weeks. You can keep a journal to track your symptoms and stress levels while off that food. And since you are really suffering, you might even want to start with eliminating a range of food out of your diet for two weeks.
Sounds like some good specific diets have been recommended up above.
I want to remind you that you need to keep up your liquids (clear liquids are generally the "safest") during all of this, and of course you have to keep up fiber intake for your particular problem. You can try Citrucel or Metamucil, if you haven't already, and also add magnesium supplements.
Lastly, stress factors in as well as diet, so lifestyle changes shouldn't be dismissed here. Relaxation exercises, yoga or meditation might help, too.
posted by misha at 11:57 AM on November 16, 2011
Here's the funny thing: I live in Canada (Alberta specifically), so most everything is covered insurance-wise, but I live in an incredibly remote town which makes it almost impossible to get proper healthcare. We have a brand new hospital filled with shiny machines, but nobody to operate them-- this town (like all small remote towns) struggles to hire and keep doctors. Acupuncturists and dieticians are available to me, in theory-- but they're a five-hour drive away.
Maybe I need to get a gastroenterologist referral and then plan a trip down south. The constipation is really only one of my symptoms (though it seems to set off the rest)-- my entire abdominal cavity feels raw most of the time, I struggle to take a full breath because of the pressure on my diaphragm, and my entire midsection aches because I can't contract my stomach muscles to support my back, among other things. I'm pretty sure my 14 years of drug addiction/alcoholism did a number on my entire digestive system, but I've been clean for four years now and I have an awesome life... except for this.
Perhaps it's best not to go at this alone, then. I will make an appointment with one of the doctors to see about getting tested for allergies, to see if I can be prescribed that Amitiza (I take 5 psychiatric meds, so if there's no interaction, taking a pill each day to solve the problem would be ideal, if it works!) and failing all else, getting that gastroenterologist referral.
Thank you all for the suggestions and especially for the empathy-- I feel alone in this because I don't have anyone close who can relate or understand, and I really appreciate it.
posted by mireille at 12:16 PM on November 16, 2011
Maybe I need to get a gastroenterologist referral and then plan a trip down south. The constipation is really only one of my symptoms (though it seems to set off the rest)-- my entire abdominal cavity feels raw most of the time, I struggle to take a full breath because of the pressure on my diaphragm, and my entire midsection aches because I can't contract my stomach muscles to support my back, among other things. I'm pretty sure my 14 years of drug addiction/alcoholism did a number on my entire digestive system, but I've been clean for four years now and I have an awesome life... except for this.
Perhaps it's best not to go at this alone, then. I will make an appointment with one of the doctors to see about getting tested for allergies, to see if I can be prescribed that Amitiza (I take 5 psychiatric meds, so if there's no interaction, taking a pill each day to solve the problem would be ideal, if it works!) and failing all else, getting that gastroenterologist referral.
Thank you all for the suggestions and especially for the empathy-- I feel alone in this because I don't have anyone close who can relate or understand, and I really appreciate it.
posted by mireille at 12:16 PM on November 16, 2011
Be careful when adding fiber. I have IBS-A and fiber (bran, whole wheat, psyllium, vegetables, etc) can set off an attack of C. Triggers are so specific to each person and often times counterintuitive (my insides are happiest when I'm on a low carb diet).
On preview: Do any of your meds list constipation as a side effect?
posted by elsietheeel at 12:17 PM on November 16, 2011
On preview: Do any of your meds list constipation as a side effect?
posted by elsietheeel at 12:17 PM on November 16, 2011
for me, the important part of Amitiza is to take it regularly. some of the IBS forums online give it bad reviews, but if you read them, they're all like "i felt an episode coming on and so i took it, and NOTHING!" or they only make it the first week so their review says, "made me too sick to stand! stopped taking it!" it needs to be taken twice a day. it's a tiny pill. it'll make you feel nauseated at first probably. but if it works, it'll change your life.
your symptoms sound just like mine. i couldn't be touched anywhere from my thigh to my armpit. i had problems breathing (which set off my asthma). i couldn't sleep on my back. if i slept on my right side, i'd vomit. if i slept on my left side, it'd have to put a pillow just right to support everything and if i moved in the night, i'd wake up with horrible pain. sometimes the pain throbbed, sometimes it was sharp, sometimes it was both. when i felt my stool actually moving through me, it'd hit a strong bend right above my hip bone and i'd scream into a pillow.
i only say all this to say i understand. this isn't a small problem. this isn't just a little bit of constipation that can be helped by fiber (and i agree with elsietheeel, be careful adding fiber - it made my symptoms worse). you deserve to find a solution. i know that this tires you out and makes you feel like you can't do all the things you need to do to get it fixed (all the appointments and trips and describing your poop to 10s of people), but it's so worth it to find a workable solution. you won't even recognize yourself. it'll be night and day.
good luck.
posted by nadawi at 12:33 PM on November 16, 2011
your symptoms sound just like mine. i couldn't be touched anywhere from my thigh to my armpit. i had problems breathing (which set off my asthma). i couldn't sleep on my back. if i slept on my right side, i'd vomit. if i slept on my left side, it'd have to put a pillow just right to support everything and if i moved in the night, i'd wake up with horrible pain. sometimes the pain throbbed, sometimes it was sharp, sometimes it was both. when i felt my stool actually moving through me, it'd hit a strong bend right above my hip bone and i'd scream into a pillow.
i only say all this to say i understand. this isn't a small problem. this isn't just a little bit of constipation that can be helped by fiber (and i agree with elsietheeel, be careful adding fiber - it made my symptoms worse). you deserve to find a solution. i know that this tires you out and makes you feel like you can't do all the things you need to do to get it fixed (all the appointments and trips and describing your poop to 10s of people), but it's so worth it to find a workable solution. you won't even recognize yourself. it'll be night and day.
good luck.
posted by nadawi at 12:33 PM on November 16, 2011
Fiber's a mess for me, and I've tried pretty much every form out there (food- and supplement-based). Basically every new kind will work great for a week and then quit.
And yeah, four of my meds do list it as a side effect (lithium, lamictal, seroquel, and clonidine). Previous GPs have known about the meds when I've gone in to see if there was any way to get some relief, and they hadn't drawn a conclusion about them being the source of the problem. It's like it's hard to get them to believe me when I try to explain the extent of the problem. A couple of years ago I managed to convince one to take another step, and he sent me for a Sitz motility test (where you swallow the markers and then they x-ray to see how long they take to get through your system), but for whatever reason my system was behaving better on just those particular days, and so the result was considered more or less okay and there was no further action taken, though I knew that it wasn't right. I brought up the continuing pain with my most recent psychiatrist and he wanted me to take PEG-3350 (Miralax), which I did for two months but like all the others, it stopped working after about a week.
I just made an appointment with the doctor to take the first step, and I'm going to advocate for myself a little harder. If the Amitzia could work for me, that would be so perfect.
posted by mireille at 12:36 PM on November 16, 2011
And yeah, four of my meds do list it as a side effect (lithium, lamictal, seroquel, and clonidine). Previous GPs have known about the meds when I've gone in to see if there was any way to get some relief, and they hadn't drawn a conclusion about them being the source of the problem. It's like it's hard to get them to believe me when I try to explain the extent of the problem. A couple of years ago I managed to convince one to take another step, and he sent me for a Sitz motility test (where you swallow the markers and then they x-ray to see how long they take to get through your system), but for whatever reason my system was behaving better on just those particular days, and so the result was considered more or less okay and there was no further action taken, though I knew that it wasn't right. I brought up the continuing pain with my most recent psychiatrist and he wanted me to take PEG-3350 (Miralax), which I did for two months but like all the others, it stopped working after about a week.
I just made an appointment with the doctor to take the first step, and I'm going to advocate for myself a little harder. If the Amitzia could work for me, that would be so perfect.
posted by mireille at 12:36 PM on November 16, 2011
oh! (i swear i'll bow out of this thread soon) as to the counteractions/interactions of other meds - from reading and talking to my doctor it seems like you can't take it if you have a history of abdominal surgery, diarrhea, obstructions or if you are (or planning to be) pregnant. i can't find any warnings about psych meds. certainly discuss it with your doctor, but i think you'll be fine there.
posted by nadawi at 12:37 PM on November 16, 2011
posted by nadawi at 12:37 PM on November 16, 2011
mireille Maybe I need to get a gastroenterologist referral and then plan a trip down south.
Yes, this is a good idea, but take care in whom you choose. Some old-school GI docs are skeptical of elimination diets and may not be familiar with, e.g., the current gold standard set of tests for celiac disease, or fructose sensitivity. Some won't suggest that IBS can be caused by a true food allergy, let alone a sensitivity or intolerance. (There is a difference between allergies, sensitivities and intolerances.) IBS can be caused by so many things that you'll want to look for a GI who is receptive to discussing treatments and tests that he/she isn't familiar with.
When keeping a record of your symptoms to discuss with your doctor, do not neglect seemingly unrelated symptoms like joint pain, mouth ulcers, migraines, skin rashes, reproductive problems, dry eyes, always feeling cold, fatigue, iron deficiency anemia, etc. Sometimes it's the little, niggling issues that point to a specific diagnosis.
Also, if you are considering being tested for something like celiac disease, DON'T START AN ELIMINATION DIET UNTIL AFTER THE TESTS HAVE BEEN RUN AND RETURNED.
nadawi i tried to stop eating cheese, stop eating dairy, reduce my sugar and white flour intake, reduce my soy intake - nothing. no results.
Not trying to pick on nadawi at all by saying this, because it's clear she's found something that works for her, which is great:
The technique of "reducing" rather than "eliminating" is partly why shelleycat suggests seeking the advice of a dietitian or doctor with experience with strict elimination diets. If you really do have a specific set of trigger foods, very often it's not enough to reduce them in your diet or even cut them out entirely for only a week or so.
A true elimination diet requires excruciating care in label reading. Is that maltodextrin corn- or wheat-derived? What's the source of the minute amount of hydrogenated oil in this jar of garlic powder seasoning? Did you know that shredded cheeses are usually dusted with small amounts of potato, corn, or wheat starch? Jarred mayonnaise is usually made with soybean oil. Non-dairy cheeses almost all contain the dairy protein casein to enhance melting.
Many elimination diets require a lengthy introductory phase where you avoid nearly all packaged foods, even spices, because of the additives trap. A few restrict to three to five least allergenic foods at first: usually lamb or turkey, soft-cooked carrots, pears, white rice, and salt, plus or minus the pears and white rice.
Some elimination diets implement an avoidance period as short as four days. This is often not long enough to determine a problem in the case of a food intolerance or sensitivity that isn't a true (IgE-mediated) allergy. It's entirely possible to react to cold water alone because you're sensitive to another food that hasn't been completely removed from your diet for a sufficient length of time.
Basically, a true elimination diet can be worthwhile but is a serious pain in the ass (ha.).
posted by hat at 1:18 PM on November 16, 2011
Yes, this is a good idea, but take care in whom you choose. Some old-school GI docs are skeptical of elimination diets and may not be familiar with, e.g., the current gold standard set of tests for celiac disease, or fructose sensitivity. Some won't suggest that IBS can be caused by a true food allergy, let alone a sensitivity or intolerance. (There is a difference between allergies, sensitivities and intolerances.) IBS can be caused by so many things that you'll want to look for a GI who is receptive to discussing treatments and tests that he/she isn't familiar with.
When keeping a record of your symptoms to discuss with your doctor, do not neglect seemingly unrelated symptoms like joint pain, mouth ulcers, migraines, skin rashes, reproductive problems, dry eyes, always feeling cold, fatigue, iron deficiency anemia, etc. Sometimes it's the little, niggling issues that point to a specific diagnosis.
Also, if you are considering being tested for something like celiac disease, DON'T START AN ELIMINATION DIET UNTIL AFTER THE TESTS HAVE BEEN RUN AND RETURNED.
nadawi i tried to stop eating cheese, stop eating dairy, reduce my sugar and white flour intake, reduce my soy intake - nothing. no results.
Not trying to pick on nadawi at all by saying this, because it's clear she's found something that works for her, which is great:
The technique of "reducing" rather than "eliminating" is partly why shelleycat suggests seeking the advice of a dietitian or doctor with experience with strict elimination diets. If you really do have a specific set of trigger foods, very often it's not enough to reduce them in your diet or even cut them out entirely for only a week or so.
A true elimination diet requires excruciating care in label reading. Is that maltodextrin corn- or wheat-derived? What's the source of the minute amount of hydrogenated oil in this jar of garlic powder seasoning? Did you know that shredded cheeses are usually dusted with small amounts of potato, corn, or wheat starch? Jarred mayonnaise is usually made with soybean oil. Non-dairy cheeses almost all contain the dairy protein casein to enhance melting.
Many elimination diets require a lengthy introductory phase where you avoid nearly all packaged foods, even spices, because of the additives trap. A few restrict to three to five least allergenic foods at first: usually lamb or turkey, soft-cooked carrots, pears, white rice, and salt, plus or minus the pears and white rice.
Some elimination diets implement an avoidance period as short as four days. This is often not long enough to determine a problem in the case of a food intolerance or sensitivity that isn't a true (IgE-mediated) allergy. It's entirely possible to react to cold water alone because you're sensitive to another food that hasn't been completely removed from your diet for a sufficient length of time.
Basically, a true elimination diet can be worthwhile but is a serious pain in the ass (ha.).
posted by hat at 1:18 PM on November 16, 2011
oh yeah, i agree with hat completely about elimination diets - i wasn't trying to eliminate - i was saying that more as a i understand how frustrating this is and how a lot of what people conventionally suggest to help constipation doesn't help those of us with serious IBS-C.
posted by nadawi at 1:32 PM on November 16, 2011
posted by nadawi at 1:32 PM on November 16, 2011
Rereading everyone else's answers, especially hat's, I should note that my "go it alone" elimination diet came after consulting with a primary care physician and doing a lot of reading, and from the perspective of someone who regularly evaluates the protocols of clinical trials for work and is totally comfortable sorting through research literature to find out the fructose to glucose ratio of sweet potatoes. But if I didn't find that cool and interesting and something I was good at? Yeah, nutritionist.
My avoidance period, fwiw, was two full weeks, with 3 days in between addition of new food types. Like others in this thread, I am very sensitive to fiber additions, because a lot of them contain inulin, which is a fructan, which was one of the things I was specifically challenging (and ended up being sensitive to) during my two month long elimination and reintroduction jaunt.
posted by deludingmyself at 4:11 PM on November 16, 2011
My avoidance period, fwiw, was two full weeks, with 3 days in between addition of new food types. Like others in this thread, I am very sensitive to fiber additions, because a lot of them contain inulin, which is a fructan, which was one of the things I was specifically challenging (and ended up being sensitive to) during my two month long elimination and reintroduction jaunt.
posted by deludingmyself at 4:11 PM on November 16, 2011
Not strictly about elimination diets, but as a fellow sufferer (IBS-A for over 15 years), I'd like to add a few thoughts.
If you want to try an elimination diet, the FODMAPs one seems to be good. I didn't do the whole thing, but the information helped me to discover what several of my trigger foods are.
The best luck I've had when in my mercifully few C phases has been with a low residue style. At the worst I lived on saltines and small amounts of yogurt just to give my innards a rest. Fiber has never been helpful for me, and much insoluble fiber will reliably bring on a C episode.
One thing that I've found helpful recently has been taking magnesium supplements. The cheaper ones with magnesium oxide in the blend are known to have a bit of laxative effect but it generally helps muscles relax too. I started taking it for my restless legs, but it seemed to help when I stupidly ate a flaxmeal muffin. I don't think that it would interfere with any of your meds, unless you are taking quite a lot of lithium and have to be very careful about water intake and electrolytes.
Quick thought: Because Seroquel is so antihistamine among other things, it may mess with digestion. I had terrrible trouble with it but I was on other stuff too, so it could have been anything.
Whatever happens, I hope that you find something to help relieve your misery.
posted by monopas at 4:15 PM on November 16, 2011
If you want to try an elimination diet, the FODMAPs one seems to be good. I didn't do the whole thing, but the information helped me to discover what several of my trigger foods are.
The best luck I've had when in my mercifully few C phases has been with a low residue style. At the worst I lived on saltines and small amounts of yogurt just to give my innards a rest. Fiber has never been helpful for me, and much insoluble fiber will reliably bring on a C episode.
One thing that I've found helpful recently has been taking magnesium supplements. The cheaper ones with magnesium oxide in the blend are known to have a bit of laxative effect but it generally helps muscles relax too. I started taking it for my restless legs, but it seemed to help when I stupidly ate a flaxmeal muffin. I don't think that it would interfere with any of your meds, unless you are taking quite a lot of lithium and have to be very careful about water intake and electrolytes.
Quick thought: Because Seroquel is so antihistamine among other things, it may mess with digestion. I had terrrible trouble with it but I was on other stuff too, so it could have been anything.
Whatever happens, I hope that you find something to help relieve your misery.
posted by monopas at 4:15 PM on November 16, 2011
A FODMAP intolerance is diagnosed by specific tests (some kind of breath testing) administered by an appropriate gastroenterologist. It's not something you find out by elimination diet, food challenges done on your own, or by guessing. Which is good because you actually get a hard and fast diagnosis, something that's rare in IBS. Then, if you are intolerant to one or more of the potential nutrients, it gets followed up by a visit to a dietician to work out what exactly needs to be cut out while still maintaining a balanced diet. Fruit provides a really important source of soluble fibre which helps prevent constipation and promote good bowel function, so advising someone with constipation issues to just randomly remove fruit from their diet is actually bad advice. So please don't do the FODMAP diet without some kind of medical oversight (particularly since seeing an actual Doctor can get that particular one properly diagnosed without the stuffing around anyway!).
To be really clear, why you should not be taking diet advice from strangers: With the amount of pain you're in from constipation it's possible that, at this point, a flare in your symptoms caused by dietary change - which, again, can happen just because you changed things regardless of what you changed - could potentially lead to bowel obstruction and a hospital stay. Even if it doesn't get that far, I can tell you from first hand experience that ending up in the ER after hours and hours of vomiting simply because the pain and cramping in your intestines is so strong is really not fun, this is not something to mess around with.
And, of course, you need a medical professional to be prescribing you medication anyway. There are options available, including the ones mentioned above, and none of us can tell you if any of them are suitable for you. Personally, I took an anti-spasmodic for years with good effect and the medical literature shows that particular drug only provides relief for a smallish subset of people. So finding someone who knows their stuff is particularly helpful, they will be able to suggest a range treatment options that may be suitable to you specifically and will help you try them out.
So yeah. Find a gastroenterologist with experience in IBS who is up on the latest everything, including asking them about what they know/think about the whole FODMAP thing since it's pretty new, and preferably one linked with a dietician or at least able to give some kind of knowledgeable diet advice themselves, then go see them. It sucks that you're so far away and it will be difficult to do, but IBS sucks too. Hopefully once you've seen someone in person they'll be able to co-ordinate your care from afar. In particular, I can imagine a dietician not needing to see you in person to be able to give advice, so look into those kinds of options too.
posted by shelleycat at 10:33 AM on November 17, 2011
To be really clear, why you should not be taking diet advice from strangers: With the amount of pain you're in from constipation it's possible that, at this point, a flare in your symptoms caused by dietary change - which, again, can happen just because you changed things regardless of what you changed - could potentially lead to bowel obstruction and a hospital stay. Even if it doesn't get that far, I can tell you from first hand experience that ending up in the ER after hours and hours of vomiting simply because the pain and cramping in your intestines is so strong is really not fun, this is not something to mess around with.
And, of course, you need a medical professional to be prescribing you medication anyway. There are options available, including the ones mentioned above, and none of us can tell you if any of them are suitable for you. Personally, I took an anti-spasmodic for years with good effect and the medical literature shows that particular drug only provides relief for a smallish subset of people. So finding someone who knows their stuff is particularly helpful, they will be able to suggest a range treatment options that may be suitable to you specifically and will help you try them out.
So yeah. Find a gastroenterologist with experience in IBS who is up on the latest everything, including asking them about what they know/think about the whole FODMAP thing since it's pretty new, and preferably one linked with a dietician or at least able to give some kind of knowledgeable diet advice themselves, then go see them. It sucks that you're so far away and it will be difficult to do, but IBS sucks too. Hopefully once you've seen someone in person they'll be able to co-ordinate your care from afar. In particular, I can imagine a dietician not needing to see you in person to be able to give advice, so look into those kinds of options too.
posted by shelleycat at 10:33 AM on November 17, 2011
Update: For the two days after I posted this question, I ate only yogurt and saltines like monopas suggested. My pain improved significantly, though obviously that's semi-starvation isn't a sustainable long-term solution. Last week I went to the one local doctor that I like, he sent me for Celiac and RAST (food allergy) blood tests. All came back negative.
Short rant: I had to go back for the results and had to see a different doctor (there's a dire shortage of GPs in this province but there are a surplus in South Africa, so the doctors come here for two months and then go home for two-- not a lot of continuity available for patients). He took one look at my list of psychiatric meds and I was forthright about being in recovery, and he became instantly dismissive and minimized the problem, effectively telling me that it's my fault that my digestive system is fucked and that no gastroenterologist would take my symptoms seriously either when they saw my meds list. I'm used to this dismissive reaction every time I see a doctor but it really makes me angry. Not to mention he tried to prescribe me benzos, which were part of my addiction (and not the first time this has happened to me since I've been clean). It gets really old fighting doctors to be taken seriously and to protect my sobriety, but not many GPs have experience with addictions and they don't really make any effort to understand.
I insisted on a gastroenterologist referral and one came through for an internist who could send me for scopes but whose focus wasn't specifically digestive. I fought back and called around to see if someone could recommend a specific doctor who might at least listen to me and not write me off based on my past, and was given a recommendation by a nurse in the GI clinic in one of the hospitals in Edmonton. I phoned back to the local clinic and requested this doctor specifically, and am now just waiting to hear back with an appointment date. So it's going to be an 8-hour drive instead of the 5 hours to Grande Prairie, but at least we can get a little culture in Edmonton!
I'll update again when I have more information.
posted by mireille at 7:40 AM on December 8, 2011
Short rant: I had to go back for the results and had to see a different doctor (there's a dire shortage of GPs in this province but there are a surplus in South Africa, so the doctors come here for two months and then go home for two-- not a lot of continuity available for patients). He took one look at my list of psychiatric meds and I was forthright about being in recovery, and he became instantly dismissive and minimized the problem, effectively telling me that it's my fault that my digestive system is fucked and that no gastroenterologist would take my symptoms seriously either when they saw my meds list. I'm used to this dismissive reaction every time I see a doctor but it really makes me angry. Not to mention he tried to prescribe me benzos, which were part of my addiction (and not the first time this has happened to me since I've been clean). It gets really old fighting doctors to be taken seriously and to protect my sobriety, but not many GPs have experience with addictions and they don't really make any effort to understand.
I insisted on a gastroenterologist referral and one came through for an internist who could send me for scopes but whose focus wasn't specifically digestive. I fought back and called around to see if someone could recommend a specific doctor who might at least listen to me and not write me off based on my past, and was given a recommendation by a nurse in the GI clinic in one of the hospitals in Edmonton. I phoned back to the local clinic and requested this doctor specifically, and am now just waiting to hear back with an appointment date. So it's going to be an 8-hour drive instead of the 5 hours to Grande Prairie, but at least we can get a little culture in Edmonton!
I'll update again when I have more information.
posted by mireille at 7:40 AM on December 8, 2011
Okay, another update. I was finally able to see a gastroenterologist for a consultation a couple of months ago, and she ordered a colonoscopy and endoscopy. She said that much of the extreme pain and inflammation was a direct result of the constipation, and if we could get things moving, that it would greatly reduce the pain. She was awesome-- she listened, she had a plan of action, and she cared. Loved her.
Last week I went down to the city for the procedures (there are pretty long wait times here)-- they managed to set a follow-up for the following day because I was traveling down from up north. I'll spare you the details of the prep, but I'll be honest and say that I was pretty terrified she'd say everything was normal when I went in for the follow-up.
But there's excellent news! It turns out I have an abnormally long colon! She was joking that she was going along with the scope saying "surely, it has to end around this corner!" for quite a while, and that it just kept going. Okay, so this is both a) not a really big deal and b) AN EXPLANATION.
Basically, the colon's job is mostly to draw water out of whatever's moving through it. And the longer it all stays in there-- the longer it has to travel-- the more water is removed= miserable constipation with an organic cause! I can't tell you how happy this makes me.
Anyhow, the plan of action is for me to take two over-the-counter laxatives (Miralax to draw additional water back into the colon and Senekot to keep things moving) for, well, the rest of my life. But-- yay! I'm only a couple of days into the new "plan", but I'm hoping that this will help things greatly. She did say that I do have IBS on top of this, and that I will never be entirely pain-free, but that we can manage it so that it is minimized.
Thanks to everyone for getting me turned around properly on this, and pushing me to see a specialist!
posted by mireille at 10:44 PM on May 20, 2012
Last week I went down to the city for the procedures (there are pretty long wait times here)-- they managed to set a follow-up for the following day because I was traveling down from up north. I'll spare you the details of the prep, but I'll be honest and say that I was pretty terrified she'd say everything was normal when I went in for the follow-up.
But there's excellent news! It turns out I have an abnormally long colon! She was joking that she was going along with the scope saying "surely, it has to end around this corner!" for quite a while, and that it just kept going. Okay, so this is both a) not a really big deal and b) AN EXPLANATION.
Basically, the colon's job is mostly to draw water out of whatever's moving through it. And the longer it all stays in there-- the longer it has to travel-- the more water is removed= miserable constipation with an organic cause! I can't tell you how happy this makes me.
Anyhow, the plan of action is for me to take two over-the-counter laxatives (Miralax to draw additional water back into the colon and Senekot to keep things moving) for, well, the rest of my life. But-- yay! I'm only a couple of days into the new "plan", but I'm hoping that this will help things greatly. She did say that I do have IBS on top of this, and that I will never be entirely pain-free, but that we can manage it so that it is minimized.
Thanks to everyone for getting me turned around properly on this, and pushing me to see a specialist!
posted by mireille at 10:44 PM on May 20, 2012
I am so glad to read this. Both finding out what's wrong and finding out it's not something really horrible is pretty much the best outcome given you're not going to magically get better (which of course would be the best option!).
There is growing research to show that kiwifruit, one or two eaten per day, improves laxation and helps prevent constipation. They have kind of weird cell walls which soften stools while adding bulk (so add in moisture without making things runny). Here is one and two journal papers, and I know at least one of those groups is doing ongoing research into this. If you can tolerate kiwifruit - I know a lot of people are allergic - it's something you should consider because I think the profile of what they do could be beneficial for you. The allergens in the green ones versus yellow ones are slightly different so if one doesn't work, the other still might. Don't go crazy and eat a whole lot, and actually big sudden changes in diet aren't a great idea in general, but it might help.
posted by shelleycat at 8:38 AM on May 21, 2012
There is growing research to show that kiwifruit, one or two eaten per day, improves laxation and helps prevent constipation. They have kind of weird cell walls which soften stools while adding bulk (so add in moisture without making things runny). Here is one and two journal papers, and I know at least one of those groups is doing ongoing research into this. If you can tolerate kiwifruit - I know a lot of people are allergic - it's something you should consider because I think the profile of what they do could be beneficial for you. The allergens in the green ones versus yellow ones are slightly different so if one doesn't work, the other still might. Don't go crazy and eat a whole lot, and actually big sudden changes in diet aren't a great idea in general, but it might help.
posted by shelleycat at 8:38 AM on May 21, 2012
shelleycat- that's some interesting research! Unfortunately, I've only seen kiwifruit here once or twice in the town's two grocery stores, so that wouldn't be a consistent/reliable solution in my case. I hope that it helps someone else who reads this thread, though!
posted by mireille at 10:08 AM on May 21, 2012
posted by mireille at 10:08 AM on May 21, 2012
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The best thing to do right now is keep a food and symptoms diary tracking everything you eat, all the different symptoms of how you feel (include non-intestinal things like migraines, also look up the Bristol stool scale) and any external factors (e.g. menstrual cycle if you're female). Then take it to someone qualified - not just a random nutritionist but a licensed, qualified dietician pereferably with experience in IBS -and sort this out properly.
posted by shelleycat at 11:30 AM on November 16, 2011